EpiRomania (formerly ANBER), Romania
Project: EPI Caravanbringing education and medical services to people in rural and isolated areas
EpiRomania is the only association in Romania that focuses on the social aspects of epilepsy. The association was founded in 2001 and its first projects focused on creating support groups for people with epilepsy. Since 2003 the organization has been involved in advocacy campaigns focused on several problems that people with epilepsy face (lack of government funding for medication, driving issues, etc).
The year 2007 brings some big changes for the organization. Staff numbers are increasing to 7 as the organization launches its biggest project yet, the first epilepsy clinic in Romania EpiCenter (starting in May 2007). All current members of staff have at least 2 years experience in working with people with epilepsy.
In 2004 EpiRomania began its first large project designed for the rural areas in Cluj County. The project brought more valuable information about the problems of people with epilepsy and also about what could be done for them. Official data showed that only 55% of people with epilepsy receive some kind of treatment. EpiRomania has discovered that in the rural areas the prevalence of epilepsy is well below average and of those who are diagnosed and assumed to be under medical treatment, only some are actually under medication and also many are improperly treated (seizure frequency is very high). As for seizure control, this is not really an issue because in Romania most doctors only equate epilepsy with having seizures.
Knowing this information EpiRomania initiated several campaigns aimed at raising the level of knowledge about epilepsy in the rural areas with the greater goal of finding the missing 45% of people with epilepsy. In 2005 the association realized that its campaigns were only partially successful because people living in rural areas had great difficulties of access, meaning that they had to travel great distances in order to get to a neurologist, which is also quite costly, and sometimes, once they are there, they have to wait in line for several hours before actually having a consultation. EpiRomania decided that, instead of sending people to the doctor, the association would take a neurologist to a few villages to see how this would work. The results exceeded their most optimist expectancies. This is how EpiCaravan project was born.
Through this project EpiRomania aims to work in two great rural areas. These specific areas were chosen because the villages in these areas are quite remote, access to the neurologist is quite difficult and also, as far as it is known, these areas have never been approached with anything similar.
The target group is large, as the aims of the project are to screen for new cases, as well as to review older cases of epilepsy. EpiRomania noticed that in most rural areas, there are no diagnosed cases of partial seizures and suspect that this might be due to the fact that there is no one capable of recognizing such seizures.
EpiRomania expects the impact of the project to be a positive one. It expects mainly two things: discovering new cases of undiagnosed epilepsy and realizing more accurate diagnosis and reducing seizure frequency in already diagnosed cases.
Many challenges are also expected. Stigma is quite powerful and even more so in the rural areas and the association has to rely to a certain extent on collaboration with key persons who live or work in those communities (teachers, GPs, priests) in order to screen for new cases. Those people might not always be willing to help. However, EpiRomania believes that with proper motivation it can convince people to become involved in this initiative. Also, previous experience with similar projects shows that this kind of activity can succeed.
The main goal of this project is to explore remote villages in a specific area and to give medical services to people with epilepsy living in those communities.
The objectives are:
- to screen for new cases
- to give on site consultations in order to review older cases
- to educate the community about issues related to epilepsy in order to reduce stigma and to facilitate social integration of people with epilepsy living in those communities.